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Saturday, April 30, 2011 AJ, Community Member, asks

Q: 37 years old with Osteoporosis

Hello, I just came across this site and am hoping for some advice.  I am not sure if this question was previously posted, I apologize if it is.  I am 37 and recently diagnosed with Osteoporosis.  I have a fractured rib and fractured spine and this is why I was sent for xrays and a bone density test.  My T score ranges from -3.5 to -3.9.  My dr wants to put me on Boniva and Miacalcin.  Everything I read is that these drugs are for postmenopausal women and have severe side effects.  I may want to have a child and don't want to be concerned with the longevity of the treatment affects.  They do not know why I have Osteoporosis and I feel they should keep testing until they find out rather than just put me on drugs.  They thought I had hyperparathyroidism but now say I don't.  I need to get my bones back to good but I am not sure if I should be on bisphosphonates.  Any thoughts/suggestions?   Thank you so much!   

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Answers (3)
4/30/11 5:19pm

Greetings AJ,

 

At such a young age with a recent (fragile??) fracture and very low T-score (less than -3.0), I would strongly recommend seeing a super specialist, specifically a bone mineral specialist.

 

You will likely have to travel. One program is in St. Louis, MI:

Bone Health Program at Barnes-Jewish Hospital and Washington University School of Medicine is a national referral center for the prevention, diagnosis and treatment of metabolic bone diseases, particularly osteoporosis and Paget's disease, with emphasis on patient care, research and teaching.

 

Another program is in the state of New York:

Winthrop-University Hospital has been internationally recognized as a leader in osteoporosis research, with supporting grants from many sources, including the National Institutes of Health and the pharmaceutical industry. The Hospital’s bone mineral specialists conduct basic science and clinical bone metabolism studies, examining pathogenic mechanisms responsible for the development of skeletal fragility and osteoporosis.

 

For more information, please read my article When to Consult with a Bone Expert

 

Your health and possibly your child's health depends on you getting some expert care in this matter.

 

Dr. Christina Lasich, MD

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AJ, Community Member
4/30/11 6:00pm

Thanks for the tip, Dr. Lasich! I will definitely look into it.

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karenoma, Community Member
5/ 1/11 5:33pm

I also thank Dr. Lasich. I am happy to know of these programs, and looking into them seems a good course for you to follow -- there must be something else there since you are so young!  Good luck and I wish you a return to good health!

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karenoma, Community Member
5/ 1/11 5:33pm

I also thank Dr. Lasich. I am happy to know of these programs, and looking into them seems a good course for you to follow -- there must be something else there since you are so young!  Good luck and I wish you a return to good health!

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karenoma, Community Member
5/ 1/11 5:25pm

Please, please go to the Topix site www.topix.com/  

I think in that site, the discussion is identified as the Sally Field discussion or blog.

Read the testimonials there -- pages of them.  Please, please do NOT take any of these meds, bisphosphonates.  These meds work by stopping old bone removal, thus making the bones thicker [but brittle because it is old bone], AND ALSO stopping new bone building.  It is new bone that gives bone flexibility.  How can bones heal if no new bone is made?  How can they not ache and not become brittle if there is only old bone and it is never shed?   Take plant-source calcium, vitamin D and other minerals, a diet of high alkaline [low acid] foods, and do as much strengthening exercise as you can! 

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karenoma, Community Member
5/ 1/11 5:37pm

Also, go to a super specialist as recommended by Dr. Lasich above.  Good luck!

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MJS MN, Community Member
6/ 2/11 7:29am

Have you been tested for Celiac disease? I was recently diagnosed with this and am going for a bone density test today because that can increase the possibility of osteoporosis.

 

As you may know Celiac is an intolerace for gluten in many foods and affects the small intestines and the immune system which leads to malnutritian and malabsorbtion (sp?) of nutrients (such as vitamen D deficieny which weakens the bones). Condition improves with a gluten free diet.

 

It is one thing you could check with your doctor...best way to get diagnosis is a biopsy of small intestine through endoscopy at a gastro specialist.

mjs MN

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AJ, Community Member
6/ 2/11 5:35pm

Yep!  They tested me for Celiac and other diseases that may cause malabsorption.  Several tests revealed negative for any of the above.  Problem is, they still don't know why I have osteoporosis and have now found a third fracture in my spine.  My dr claims I can get spinal fractures from sneezing!  That's a little scary.  So now I am taking high doses of calcium daily and will have a second density scan in Sept to see if this "natural" course of action is working.  It is just such a long process. 

 

I wish you luck with the test and pray you do not have osteoporosis!

     

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MJS MN, Community Member
6/ 2/11 7:19pm

did they do the biopsy of your small intestine or a blood test for celiac? I originally ad a blood test that came back negative, but the biopsy was positive.

 

I had severe respiratory issues for the past 8 months (I am 46, non smoker), went to 7 different doctors they thought I had acid reflux causing my cough and wheezing, out of frustration I made an appointment at the Mayo at the end of June and ordered copies of all of my xrays and CT's since Sept. I looked through the radiology reports and found that they had missed that I had pnemonia back in Sept. (and figured I may have had recurring pnemonia all winter). I coughed so hard the entire month of April, I ended up with a fractured rib last month....I then found out about the celiac and that can affect the immune system and bone density.....but if they all ready checked you for that I am not sure what would be the cause! Just don't give up, keep going until you find an answer, I found out you really have to take charge of your own health! The doctors may have medical degrees but they don't have the time to review all of your test results in detail!

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AJ, Community Member
6/ 2/11 11:25pm

Wow, 8 months, I can't imagine!  Sorry you have been dealing with it for so long.  No biopsy, just blood tests...interesting that it came back negative for you but in fact you have it.  Maybe I will push a little harder with my endocrinologists.  I hear you on seeing so many drs....I think I am on number 5 now, it is very frustrating.  You are absolutely correct in saying that you have to fight for your self, your health!  I learned that even though they are drs, doesn't make them any smarter, as I have had to argue and push for answers.  Some got mad that I did research on the internet, as if the internet is all false info.  I am very cautious on what I read and feel it is important to educate yourself and reach out to others going through the same issues. 

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By AJ, Community Member— Last Modified: 06/02/11, First Published: 04/30/11